pridemom
Pearl Clutcher
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Post by pridemom on Feb 6, 2015 4:29:12 GMT
The Disease Affecting 300,000 Kids in the United States That You Don't Know About This is a great article trying to get the word out that 300,000 kids in the US suffer from a disease that many have no idea exists. My 15yo is one of them. Arthritis does not only affect old people. Juvenile arthritis is a lifelong auto-immune disease. It causes painful joints, blindness, and in severe cases, death. I know kids who have had hips, jaws, and other joints replaced due to joint destruction from arthritis. These kids inject their bodies with or swallow chemotherapy drugs. My daughter gives herself two painful injections each week, and swallows 6 pills each day. We know other kids who go for IV infusions of powerful medications to try to stop disease progression. m.huffpost.com/us/entry/6613768Thanks for helping us spread awareness. Kids Get Athritis, Too! |
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Post by freecharlie on Feb 6, 2015 4:41:58 GMT
DH had it as a teen (has it?) It affects his fingers, elbows, and ankles. He suffered a lot of pain
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Deleted
Posts: 0
Aug 18, 2025 21:37:26 GMT
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Post by Deleted on Feb 6, 2015 4:50:15 GMT
My BFF here in Canada got it when she was 21 so I suspect she had it earlier than that but was just sore and achy. When she was 20 or 21 she tried to do some "stretches" on the floor and got stuck. Her mom came and got her up off the floor.
This is not easy to live with. She has had 1 hip replaced 2x and the other hips replaced 1x. She has had an elbow replaced and needs the other one done. She will lose her livelihood when she has it done, though so she is putting it off. Her other hip needs to be replaced too. She has had more cortisone shots than I can remember. She tells me things like "Yeah I just got another one." and I am "WHAT??? Another one? How and where?"
Good luck to your daughter. I hope the drugs she is on work and continue to work and in the future there will be other good long-term, good quality care options for her. Stabbing yourself in the stomach or leg 2x week is not pleasant. I do it for my mom and she winces in pain and it makes me very upset for her...I don't want to hurt her so doing it for her upsets me, but if I didn't do it then who would?
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Post by mellyw on Feb 6, 2015 5:22:02 GMT
I've said it before, Pridemom, but the thought of any child living with RA just makes me feel awful. I was 39 when I was diagnosed, & it has been tough at times for me. And I'm not a wimp, my medical history is pretty scary. From a brain tumour at 5, to a nasty case of Trigeminl Neuralgia that's lasted a couple years. And I'm telling you, RA hurts.
I think at some point, the trigger for these Auto-immune diseases will be found. My DD is a Type 1 Diabetic, not obviously related to my RA, until you realize something has gone "wrong" in our bodies. Auto-immune diseases tend to run in families, not always the same auto-immune disese though.
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Post by zinnia on Feb 6, 2015 13:12:11 GMT
I have ra, and 4 of my 5 kids have jia. It sucks. Three of us are on infusions alsonf with methotrexate injections. One also was lucky enough to get the bonus of crowns diseas and Eoe disease. Our house looks like a pharmacy, and most people have no understanding of any of these diseases or that it affects the whole body. Uveitis came to my son when he was 7 thankfully the doctor saved his eyesight. I am slowly losing mine.
The worse part is the school. My son misses a lot of gym, so they make him write essays. I tell the teachers his fingers and wrists are involved. And they say he has to write n essay o4 play gym, they do not know what else to do. They also tell me if only they were in school more I tell them if only he did not have jia. It effects every part of their body. Eyes, heart , growth. And the meds side effects are nasty too.
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Post by Linda on Feb 6, 2015 13:12:31 GMT
I'm sorry that your daughter is dealing with that. My grandmother had JRA and I was diagnosed in my late teens - I keep hoping it's not something I've passed on to my children
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back to *pea*ality
Pearl Clutcher
Not my circus, not my monkeys ~refugee pea #59
Posts: 3,149
Jun 25, 2014 19:51:11 GMT
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Post by back to *pea*ality on Feb 6, 2015 13:28:49 GMT
I hope researchers find the trigger to autoimmune disease so your daughter will have a bright future without RA.
Autoimmune diseases seem to be on the rise, taking various forms.
I have Hashimoto's thyroiditus. It took me years and years to find a doctor to partner with me to find the right medication and dosage. She suggested supplements and dietary changes to reduce inflammation (for me, gluten free makes a huge difference). Some days I feel 100%, most days 80% and I can live with that.
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Post by Spongemom Scrappants on Feb 6, 2015 13:29:05 GMT
The daughter of a friend was diagnosed with this just before entering puberty. She's had a painful adolescence and missed a lot of school. As medical research progresses, hopefully better treatments will be found, if not full cures or even prevention.
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BarbaraUK
Drama Llama
Surrounded by my yarn stash on the NE coast of England...............!! Refupea 1702
Posts: 5,961
Location: England UK
Jun 27, 2014 12:47:11 GMT
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Post by BarbaraUK on Feb 6, 2015 14:10:21 GMT
There's also about 12.000 children suffering from this just in the UK (approximately the same percentage of children as in the US I think). JA has got to rank in the 'most awful things children can suffer' from list!  Hopefully, in the near future medical research will find something to halt progression of this, or make things easier for the children suffering from it worldwide. |
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pridemom
Pearl Clutcher
Posts: 2,843
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Post by pridemom on Feb 6, 2015 14:42:11 GMT
Thanks for the responses. Yes, it is painful. I was diagnosed at 16, but had symptoms that I recall from age 5. I get steroid injections regularly and my daughter has had more than I have. She is my warrior. She pushes through so much pain on a daily basis that people have no idea a child could bare. One of the teachers at her school stopped me and asked why she struggles so much. She said DD will come into school some mornings looking on the verge of tears, but pushes through the day. Since starting her new Biologic, she has improved greatly and the bad days come less often. Zinnia, you must be an amazing mom. Just one of my four kids received my bad gene--whichever one it may be since it's not HLA b27. Is your son on a 504 Plan? Our daughter is and PE is self limiting based on her rheumatologist's recommendation. She also has accommodations for absences, trips to the nurse, stretching during class, use of elevator, use of a wheeled backpack, and writing in class. She uses a small laptop at school, teachers provide copies of notes, and she has extra time for homework and tests. We met with the school counselor to make the 504, then met with all of her teachers to educate them on JIA, DD's manifestations, and answer questions. We have done this since she was diagnosed and it's been very effective. My hubby is working with the Arthritis Foundation to develop a webinar on IEPs and 504 Plans. If you would like a copy of our DD's 504 Plan for ideas, please private message me and I will send it. Check out www.kidsgetarthritistoo/resources/educational-rights-kit/ for some resources. |
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Post by compwalla on Feb 6, 2015 14:57:31 GMT
I have psoriatic arthritis and have been dealing with it since my early 20s. Many of the treatments are the same. I get it. It sucks. People think you're a whiner when you say you can't do something because of your arthritis and you're not even 30. I'm sure it's worse the younger you are.
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pridemom
Pearl Clutcher
Posts: 2,843
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Post by pridemom on Feb 6, 2015 16:30:46 GMT
I appreciate your stories everyone. Freecharlie, I hope your hubby is doing well now. I was in remission for over ten years without treatment, but it started back about ten years ago. I just started Enbrel after my daughter had good results and Methotrxate messed up my liver. My liver is returning to normal and I am praying for good results.
We are involved with the Arthritis Foundation. They are researching for a cure. My hubby's expertise is special education lets him explain IEPs and 504 Plans to parents. My experience in disability advocacy, Voc Rehab, and ADA law help as well.
I want a cure so I don't have to see another child in pain, especially my kids or future grandkids.
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Post by zinnia on Feb 6, 2015 16:52:45 GMT
Thanks pride mom, one has an iep, one has a 504 and two are in the stages of getting a 504. It the beginning of the year it goes well, but the teachers do not follow through. My my boys do not bring it to my attention , as they do not want me to say anything to the school. They do not want anyone knowing about their jia. My 2 girls don't mind. My one son does have the hlab27 gene. The son with the chrons disease gets the most understanding, as all the teachers have heard about that disease, yet the jia causes him the most problems.oh I am not an amazing mom at all. I am just an everyday normal mom. We just do doctors, not sports.
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Post by mellyw on Feb 6, 2015 20:03:40 GMT
I have ra, and 4 of my 5 kids have jia. It sucks. Three of us are on infusions alsonf with methotrexate injections. One also was lucky enough to get the bonus of crowns diseas and Eoe disease. Our house looks like a pharmacy, and most people have no understanding of any of these diseases or that it affects the whole body. Uveitis came to my son when he was 7 thankfully the doctor saved his eyesight. I am slowly losing mine. The worse part is the school. My son misses a lot of gym, so they make him write essays. I tell the teachers his fingers and wrists are involved. And they say he has to write n essay o4 play gym, they do not know what else to do. They also tell me if only they were in school more I tell them if only he did not have jia. It effects every part of their body. Eyes, heart , growth. And the meds side effects are nasty too. I just can't imagine, Zinnia. Not to be presumptive, but are there studies your family could be part of? I only ask because my DD participated in an on-going study with her Type 1 Diabetes. Almost as soon as she was diagnosed, we were contacted. DD's first cousin, diagnosed 5 years before her, was in the study. They are looking in particular for the link in families. |
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pridemom
Pearl Clutcher
Posts: 2,843
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Post by pridemom on Feb 7, 2015 1:47:41 GMT
I just can't imagine, Zinnia. Not to be presumptive, but are there studies your family could be part of? I only ask because my DD participated in an on-going study with her Type 1 Diabetes. Almost as soon as she was diagnosed, we were contacted. DD's first cousin, diagnosed 5 years before her, was in the study. They are looking in particular for the link in families. There are some studies, but many have been cut due to funding. There is not much support. JA is not a 'sexy' disease, it doesn't have a celebrity to champion for it. Look at how much attention Halle Berry has gotten for Juvenile Diabetes. We need someone to be the face of our cause. I have tweeted Jenny Garth to see if she would help since her daughter has JA. Teri Hatcher represented JA on Chopped. Research is organized by CARRA and all US pediatric Rheumatologists are networked with it. |
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Post by smokey2471 on Feb 7, 2015 1:50:14 GMT
I'm so sorry for your DD. I hope medical science find a cure or something to help those affected soon. I have some mild arthritis I could not imagine having it so young. Hugs to you both.
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Hopefully, in the near future medical research will find something to halt progression of this, or make things easier for the children suffering from it worldwide.
